Facial Paralysis and Tingling — Anyone Else Have This?

[__nico__]

Hey guys. My main problem used to be dysacusis which has decreased immensely a few days after discontinuing Flonase but still waxes and wanes and is generally pretty distressing. However, I have some new symptoms.

I went to a hospital today for the first time since onset, to get a CT scan. My first time being in a public place in over 2 months. I had earplugs and it was enough to help my noxacusis but I noticed some new symptoms today I've vaguely seen described here.

I have been having intermittent (a few per hour) pressure changes in my ears, like barotrauma, usually when walking from room to room which doesn't make sense to me. Each time this happens it's accompanied with light vertigo/balance problem and sometimes with visual distortions. This also happens sometimes when exposed to white noise or artificial sources.

When I was getting a CT scan, and also not long after that when I was exposed to a vent system, my face went totally numb, was paralyzed and slurring my speech somewhat (no pain other than in my ears), and I also had Glockenspiel-esque reactive tinnitus EMANATING FROM MY JAW. I could even feel it.

Wtf is this?

I also have a condition that may require an MRI (my first in like 13 years), are "quiet MRIs" worth it?

 

[FGG]

The "dizziness when exposed to sound" sounds a bit like it could be Tullio's, which is a very specific symptom that could help rule in/out certain things.

https://www.dizziness-and-balance.com/disorders/symptoms/tullio.html

Occasionally people with TTTS get dizzy with sound as their eardrum contracts, too.

 

[__nico__]

The "dizziness when exposed to sound" sounds a bit like it could be Tullio's, which is a very specific symptom that could help rule in/out certain things.

https://www.dizziness-and-balance.com/disorders/symptoms/tullio.html

Occasionally people with TTTS get dizzy with sound as their eardrum contracts, too.

I dont think its Tullio's because the vestibular problems and vertigo are usually exacerbated by posture, diet, shit like elevators and walking up/down stairs.

Could this just mean a fistula instead?

 

[MBH]

Meds do different things to one's body. Check the side effects. It might help you out.

 

[FGG]

I dont think its Tullio's because the vestibular problems and vertigo are usually exacerbated by posture, diet, shit like elevators and walking up/down stairs.

Could this just mean a fistula instead?

Fistula is one of the causes of Tullio's (like tinnitus, it's a symptom, not an etiology). It's possible you gave yourself a perilymph fistula with barotrauma initially and then re-traumatized yourself with noise. Definitely worth ruling in/out.

 

[__nico__]

Fistula is one of the causes of Tullio's (like tinnitus, it's a symptom, not an etiology). It's possible you gave yourself a perilymph fistula with barotrauma initially and then re-traumatized yourself with noise. Definitely worth ruling in/out.

Yeah see I had a severe barotrauma almost 2 years ago and I guess it was the catalyst for what I've been experiencing the last two months.

 

[Matchbox]

Each time this happens it's accompanied with light vertigo/balance problem and sometimes with visual distortions. This also happens sometimes when exposed to white noise or artificial sources.

When I was getting a CT scan, and also not long after that when I was exposed to a vent system, my face went totally numb, was paralyzed and slurring my speech somewhat (no pain other than in my ears), and I also had Glockenspiel-esque reactive tinnitus EMANATING FROM MY JAW. I could even feel it.

Wtf is this?

I also have a condition that may require an MRI (my first in like 13 years), are "quiet MRIs" worth it?

I had to look up Glockenspiel.

That is exactly what my "chimes" sounded like when they arrived one night when sleeping and my introduction to sound distortion... It came from the top of my jaw (back to front is what it sounded like, bilaterally, but wouldn't happen at the same time, the left would fire off, then the right, totally at random) and totally at random (but louder when it went off with a noise heard at the same time, especially chewing, and overtop noises). It happened when about to sleep and after listening to louder music with strenuous exercise.

I've had some... Minor dizziness but at random. What about your visual distortions?
Any chance they are flashes in your entire vision / peripheral in "both eyes" (as if seeing lightning out of the corner of your eye)?

I don't think we have the same things but as far as hearing that chime from your jaw is what sounded oddly familiar.

Hyperbaric Oxygen Therapy exchanged those chimes for the orchestra of death I have now, no longer from my jaw.

I've read about secondary hydrops forming years after an initial trauma... But to be blunt if a diuretic and low sodium diet don't cause changes for you within days that'd be doubtful.

Apparently our facial nerves are very close to the auditory nerves, which is why facial paralysis is a risk for cancers on that nerve / operating on them.

I think an MRI makes a lot of sense.

 

[Contrast]

I had this two years ago and it went away entirely. Doctors had no clue that it existed and looked at me like I was insane.

 

[Matchbox]

Fistula is one of the causes of Tullio's (like tinnitus, it's a symptom, not an etiology). It's possible you gave yourself a perilymph fistula with barotrauma initially and then re-traumatized yourself with noise. Definitely worth ruling in/out.

And notoriously difficult to prove if it's minor. I don't buy the spontaneous recovery... Some things just don't fix themselves without help.

 

[__nico__]

I had this two years ago and it went away entirely. Doctors had no clue that it existed and looked at me like I was insane.

I wonder why it is that people develop central neuralgia, eye problems, vestibular disorders etc. after intense noise exposure.

Maybe because the nervous system is under so much PHYSICAL stress that the body is not designed for, and coupled with corticosteroids that are so commonly administered as routine for treating noise traumas creating an imbalance in the immune system that would otherwise be treating the noise injury, triggers an autoimmune lesion affecting the auditory nerve and adjacent nerves, like optic nerves, trigeminal nerve, etcetera.

Or it could be vascular damage from the chronic inflammation from the trauma. To me this would make sense, why some people get better and some don't, that once the nervous system is exposed to extreme levels of stress (and I mean physical, not "CBT psychobabble" as people call it) it creates the preconditions for chronic inflammation as an autoimmune process which spreads around the CNS.

If the auditory nerve is damaged it is "hopeful" since the myelin sheath can be repaired, again explaining to me why some "get better".

 

[__nico__]

I've had some... Minor dizziness but at random. What about your visual distortions?
Any chance they are flashes in your entire vision / peripheral in "both eyes" (as if seeing lightning out of the corner of your eye)?

my visual distortions are peripheral flashing/white flashing or kind of a flickering, sometimes consumed my entire eyes but rarely happens. My VS will randomly change colors, sometimes it will become green-ish in tint, certainly not fun. And I see lots of sparkles but randomly.
My barotrauma happened whilst descending a mountain, more than a mile in like 10-15 minutes, was stone cold deaf for a few days, hearing slowly came back and then was greeted with constant tinnitus not long after it, for the first time. Easily maskable 2000hz tone, never changed since onset and the most livable tinnitus tone. Oh to go back to the almost 2 years I only has this and thought it was the worst it could get.

 

[FGG]

And notoriously difficult to prove if it's minor. I don't buy the spontaneous recovery... Some things just don't fix themselves without help.

There are a lot of reports of recovery of small fistulas. Large ones sometimes need surgery (or as they are apparently trying now, a blood patch).

 

[Matchbox]

If the auditory nerve is damaged it is "hopeful" since the myelin sheath can be repaired, again explaining to me why some "get better".

Unfortunately. The hair cell nerves are unmyelinated and greatly susceptible to damage. The good news is that they have a year or so before they start dying after being unsynapsed or damaged.

 

[Matchbox]

There are a lot of reports of recovery of small fistulas. Large ones sometimes need surgery (or as they are apparently trying now, a blood patch).

I wish I'd get a blood patch... seems relatively benign for risk... guess they'd want to be sure.

Where are you finding these lots of reports? I thought they were hogwash as confirming a fistula is very difficult so confirming that many small one's self repair also seems pretty unfounded. There's way less "stuff" in perilymph (basically salty CNF with more proteins) to facilitate repair versus in blood.

 

[FGG]

I wish I'd get a blood patch... seems relatively benign for risk... guess they'd want to be sure.

Where are you finding these lots of reports? I thought they were hogwash as confirming a fistula is very difficult so confirming that many small one's self repair also seems pretty unfounded. There's way less "stuff" in perilymph (basically salty CNF with more proteins) to facilitate repair versus in blood.

That's a good point, it's very difficult to confirm the small ones so it's often that they suspect a small PLF and people recover with conservative treatment. The ones that get confirmed are the larger ones that need intervention...